"We need an ACT UP for Ebola. Act Up, Fight Back, Fight Ebola!"
That message, shared via the Internet with increasing hourly frequency in recent days among seasoned AIDS activists, has captured a growing sense of urgency for movement-level activism to address what some call AIDS on steroids -- the fast-moving, deadly Ebola epidemic.
"Epidemics need to be ignored to flourish. We learned that from AIDS," says Gregg Gonsalves, a leading voice in the International Treatment Preparedness Coalition (ITPC) for HIV. "This was a 'manufactured' crisis. I mean that in the sense that the epidemic began in March and it was clear within a few weeks that it was spreading dangerously. The world decided not to act and even now the response is not commensurate with the need. We need to stand with West Africa and we should fight for them. We know how to push governments to do the right thing. Act Up for Ebola!"
As many pundits have observed, Ebola has freshly exposed the weakness of the global public health response, and of national health systems in poor countries. Liberia, Sierra Leone and Guinea are hardest-hit by Ebola now, and it's fueled by fragile health systems and governments recovering from civil wars. The key components of an effective emergency public health response -- public education, rapid screening, and treatment for disease, ethical access to drugs and vaccines, financing and leadership -- are all in limited supply. As in the early days of AIDS, activists see too much politicking and a lack of overall coordination as the key problems, making them critical targets for protest.
Who Is Politically Accountable?
"We need to identify who is politically accountable," says Rachel Cohen, a long-time AIDS activist who has worked for Housing Works and Doctors Without Borders/Medecins Sans Frontieres (MSF). "This is part of our political education from AIDS, to quickly find who is politically responsible, what is in their capacity to do, and hold them accountable."
"How is it possible that the group people are turning to, clinically, as setting the gold standard, is a private NGO?" asks Cohen, who says many governments are abdicating their role. "Where has WHO been? There is still not sufficient leadership or coordination coming from governments or intergovernmental agencies. It's incredible."
While an Ebola Czar was recently named in the United States, AIDS activists see a need to hold agencies and leaders accountable. "This is a political crisis and we have three decades of experience," Gonsalves says, putting it bluntly: "We need to be on the phone and in the offices of our representatives and senators 'acting up' on this shit."
Stigma: "It's Like HIV All Over Again."
Nigeria is cited as an Ebola prevention success story, having quickly contained its few early cases. There, Dr. Morenike Ukpong is an HIV medical ethics and research expert.
"Just like HIV, patients who have had EVD (Ebola Viral Disease) face stigma and discrimination," she states. "Evidences from the HIV global movement show clearly that stigma would need to be tackled from two ends: education of affected communities and provision of counseling, and building the competency of affected populations to cope with the stigma. Secondly, just like HIV, we do now have children orphaned by EDV who also face the challenge children with HIV faced. Community education would make a difference."
That's also true for African diaspora communities facing growing stigma.
"It's like HIV all over again," says Kim Nichols, executive director of African Services Committee, based in New York City. "Here, we're in the stage of people being so scared by what they don't know. There is xenophobia, even of U.S. travelers who might have been in the region. It's a hard moment."
Nichols cited a colleague just back from Liberia. "You can't believe how many meetings and conferences she has been disinvited from," she says. "It's plague time."
She also draws useful lessons from HIV for Ebola. "What we could have done better is community involvement and community preparedness within the first-line responder response," says Nichols. "In the early days of the AIDS epidemic there was caregiving and home care. That is something we direly need now (with Ebola), and we need to be prepared to do screening and care here, too."
Immigrant Scapegoating in the U.S.
For now, she is watching immigrants get scapegoated over Ebola. Citing one example, Nichols said a major university and longtime ASC partner had just refused to accept more blood specimens from her agency clients until further notice. "That's with us doing screening and all the precautions," she stressed, incredulous. "It's unbelievable."
"People do know how Ebola is spread, but the general public doesn't know," states Eric Sawyer, a longtime HIV survivor now with UNAIDS. "There is massive hysteria. One of the first things we did was to de-stigmatize illness by massive education campaigns; that is really needed."
He and others support sane health precautions, but are critical of broad quarantine and airport screenings as ineffective and risk driving Ebola further underground. "I think medical isolation is necessary for people who are infected and ill, and the people caring for them need to be educated. But to see airline employees and janitors picketing, saying they aren't getting the kind of HAZMAT suits and gloves they need seems to be hysteria gone awry. If folks were educated about the risks, and pilots and crews properly trained, janitors wouldn't have to worry about Ebola getting onto a plane."
Activists stress the need to focus on the gender dimensions of HIV, given that women are carrying the burden of the Ebola epidemic, both as patients and caretakers, and as mothers. "We should be giving a damn about what is happening in West Africa," says Tyler Crone, coordinator of the ATHENA women's HIV advocacy coalition. "How do we make it a feminist priority, a women's priority ... so we don't lose sight of where the disproportionate burden of Ebola is falling? I think we need to be going to the new Ebola Czar and saying, 'Here are the lessons of the HIV movement, and how it affects women.'"
Engagement, Indignity and "Shared Righteousness"
One group deserving urgent attention is Ebola survivors who are protected from Ebola now and can be educated, trained and equipped to become local caretakers for sick patients. That's a lesson from AIDS, with its movement focus on positive living with HIV, learning from survivors, buddy support, and patient rights.
The AIDS movement's strong focus on research and ethics is also useful, especially as clinical trials involving experimental Ebola treatment and vaccines advance. "One important lesson from the global AIDS activist movement is the community engagement process during clinical trial design and implementation," says Ukpong. She says that African leaders also need to step up -- and fast. "The national governments of affected countries have to own and lead the process of EVD treatment and prevention. For me, this is critical as the current drug and vaccines developers are all in the north."
"We need to talk about the research on Ebola before it's done," agrees Emily Bass of AVAC, who says reactions to Ebola are "like AIDS on warp speed." She views industry as a key advocacy target, given the perceived lack of profit in an Ebola vaccine. "What's it going to take to develop an Ebola vaccine? What's the science? Who's going to provide advance purchase guarantees? We need to rapidly assess all of this."
AIDS provides infrastructure, resources and funds that could be tapped by integrating Ebola into existing HIV programs. Nigeria fought Ebola by using the structure for national polio eradication. Ukpong views the global HIV PEPFAR programs that also fund malaria and TB programs as stepping stones, alongside polio, to fast-track resources and mobilize communities to fight Ebola.
Summing up the ACT UP call to action, Crone says, "We in the HIV movement really have something to offer. I feel the Art of Solidarity, and speaking up, of civil disobedience -- it's all that. The art of how to have indignity and shared righteousness, where we come together across movements. It's already late, but now's the time. Everybody needs to hear this message."
Anne-christine d'Adesky is a global health journalist, activist, and author of "Moving Mountains: The Race to Treat Global AIDS" (2006), and "Beyond Shock: Charting the Landscape of Sexual Violence in Post-Quake Haiti" (2012). She is Global Coordinator for Haiti for the One Billion Rising campaign to end sexual violence.